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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Dr Raymond Perrin(perrin technique) is hoping to have published reports this year

Discussion in 'Alternative Therapies' started by keenly, Apr 4, 2017.

  1. Jenny

    Jenny Senior Member

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    No, didn't feel any worse at any time. The cranial stuff was quite relaxing but that effect only lasted a few hours.
     
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  2. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Exactly, that's a big problem with ME/CFS.

    Lack of exercise sets us up for a "downward spiral" of sorts. The skin is one of our most important detox organs.
    Being unable to exercise, as well as having trouble with OI when exposed to conditions that would make us sweat, well...
    a phrase that comes to mind is, ... can't win for losing. :cry:
     
  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Learner1 touches on a good point in that if any type of physical manipulation therapy works at all it will in part have to do with the understanding and skill of the therapist involved.

    I wish that those practitioners and developers of techniques would do more rigourous studies and spend more time understanding the concepts that they suggest are at play so that choosing from these therapies is less a shot in the dark.
     
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  4. Learner1

    Learner1 Professional Patient

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    The problem is doctors do research studies, not PTs, and the lymphedema world is very small and very busy, and detoxing isn't on their radar screen - it's just a hydraulics problem to them.

    I'm really glad to have experienced how the different therapies work, and based on what I learned I can now manage it on my own using my own combo of techniques.
     
  5. Hilary

    Hilary Senior Member

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    I had regular Perrin treatments for ?a couple of years and found it helped a great deal - felt terrible after about 6 weeks but that gradually diminished and then I improved. I've deteriorated again in the last couple of years due I think to a combination of stressors and hugely overdoing things. Detoxing by one means or another for me is very important and I'm now addressing this with a FIR sauna, skin brushing, supplements and I'm not sure what else yet. But Perrin definitely useful at least for some.
     
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  6. Learner1

    Learner1 Professional Patient

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    You might want to look into PolyMVA, an alpha lipoic acid polymer that can remove toxins from mitochondria. It has mobilized things in me that no other robust strategy over the past 6 years has - arsenic, lead, styrene, MBTE, etc.

    The only catch is you need to have enough support for detox pathways to process them and move them out of the body.

    I think of it as a "bucket brigade" of moving toxins through the entire process, with everyone doing their share. ;)
     
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  7. Hilary

    Hilary Senior Member

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    Thanks @Learner1 - will investigate. I don't think I've heard of that before. I used to have lots of amalgam fillings and when I had the mitochondrial profile done and lymphocyte test, sure enough, mercury was one thing that showed up. So I had all my fillings out following a suitable protocol - and when I was retested 2 years ago, mercury had disappeared from the picture (I'd done lots of cleanses and Perrin in the meantime). But what showed up this time round was nickel and also chrome. So now I'm working on shifting those...

    Can i ask what you do to support detox pathways? I'm doing a lot of stuff for my digestion which seems to be working more efficiently now and supporting liver/gall bladder. Hope I'm not taking this thread off topic? Really like the idea of a bucket brigade :D
     
  8. Learner1

    Learner1 Professional Patient

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    I'm not sure of the rules of topics in threads. Discussing lymph and toxins together makes sense to me.

    I suspect many people on this site have similar toxic burdens, causing at least a component of fatigue, so strategizing about how to detoxify through all channels with a good bucket brigade is the way to go. I also suspect a lot of the problems with B vitamins I see on this sure are because people unwittingly mobilized toxins, but don't have the rest of the bucket brigade in place to escort them out of the body, so the toxins circulate and cause symptoms before being deposited somewhere.

    These are components of the bucket brigade:

    Producing glutathione, with lots of support for the folate cycle, methionine cycle, and transsulfuration pathways.

    Lots of MB12, with an appropriate amount of folate, and plenty of B2, B6, and magnesium. I also need TMG and methionine, though not everyone would.

    Then B1, molybdenum and taurine for the transsulfuration pathway, particularly if I start smelling like sulfur.

    And if I start to feel miserable, with headaches and unhappy intestines and feeling ill, lots of curcumin. I usually take 3g of Thorne Meriva a day, but occasionally I need IV curcumin, which works wonders - it's sort of a broad spectrum detox agent.

    And other antioxidants - vitamins A, C, and E and alpha lipoic acid.

    And mitochondrial support, like CoQ10, carnitine, d-ribose, magnesium, and NADH, and cell membrane support, like NT Factor.

    The PolyMVA mobilized mitochondrial toxins. The mitochondrial and membrane support provide the permeability and energy to get them pushed out into the bloodstream.

    Then they need somewhere to go, or they'll get redeposited elsewhere. In the liver, CYP450 enzymes work on what they can, and create intermediate metabolites, which go to Phase 2 detox which uses the nutrients above and s bunch of amino acids. Glutathione does it's job, then need to be recycled, then toxins get pushed into urine, feces, sweat, etc. And lymph is part of the transport, sending toxins to the kidneys and out of the body.

    That's the bucket brigade... and, having tinkered with this over the past 2 years with expert doctor's and regular lab testing, I can tell you that it works, though it's tedious and costly. I don't want my cancer back, so it's worth it.

    And tackling these toxins over time has gradually improved my energy.. especially getting rid of a load of arsenic the PolyMVA mobilized (but which hadn't shown up on any previous test as it had been sequestered in my mitochondria). I got all the classic arsenic symptoms for awhile and really worked the above strategies to get it out of me.

    Arsenic impairs ATP production in mitochondria, creating fatigue.
     
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  9. Valentijn

    Valentijn Senior Member

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    Dozens of people over the years have believed that we must all have some problem which requires their proposed treatment. It's all contradictory and completely unsupported. Which is why most of us require a reasonable level of evidence regarding both the cause and the cure.

    ME/CFS is an incurable complex disease which is not explained by "toxic burdens" and is not treated by "detoxification".
     
  10. keenly

    keenly Senior Member

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    Great positive attitude hey?
     
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  11. Learner1

    Learner1 Professional Patient

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    ME/CFS seems to be rooted in immune system dysfunction, so no, toxins wouldn't be the main issue, but they very well could have some impact.

    However, there are many layers of fatigue, and removing/mitigating/treating each of the cell danger response items Naviaux discusses can provide incremental benefit.

    It's highly likely that many people have multiple issues, and there's a straw that breaks the camel's back. One has to ask, where is the underlying weakness (or weaknesses) that triggers such a profound response to a virus that most other people's bodies can deal with, but leaves us so sick?

    Everyone is toxic to some degree. I recently heard Joseph Pizzorno speak. He has a new book on toxins, and has decades of experience with toxicity and health. He's gathered toxicity data from many countries and says everyone is toxic, and the pattern differs from country to country. He's also correlated them to disease, and gave examples of striking correlations.

    Of interest in Naviaux's metabolomics paper were low B12 and B2, which are essential for methylation and detoxification. These deficiencies and imbalances don't just happen in a vacuum, and some simple virus doesn't create all of them.

    We are complex systems of systems and every environmental factor influences the efficiency and function of these systems, and how our unique genes express themselves. Bottlenecks tend to cascade into problems of wide ranging effect.

    ME/CFS is complex, and while we all want the magic pill to fix us, for many of us, it won't be that simple. The pill may help, but other stuff has gotten broken along the way and will need help.

    Pizzorno says the #1 most dangerous toxin is arsenic, as it's so ubiquitous. I know you're in Europe, but here in the US, it's found in drinking water, and a factor in the production of brown rice, chicken, and wine. And it can stop ATP production and produce profound fatigue.

    I found that getting rid of arsenic didn't cure me, but it helped lessen my fatigue and improve my quality of life. My mitochondria are happier. But, it didn't fix my broken immune system, which is a work in progress.

    Some of us will be more prone to toxicity as a factor. We are the proverbial canaries in the coal mine, with lousy genetics which make glutathione production and recycling difficult, creating significant toxicity over time. My family tree has many illnesses that are toxicity related, but I'm the only one with the immune issue and CFS.

    So, it's worth looking into, at the very least.
     
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  12. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Hey,
    Sometimes reality sucks.

     
  13. barbc56

    barbc56 Senior Member

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    Interesting. This made me very wary of this treatment.
     
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  14. Valentijn

    Valentijn Senior Member

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    Nope, just realistic. Positive attitude has no proven benefit anyhow, and going too far with it can result in harmful delusions.
    Ah, but in the immortal words of Neil Young
    "Don't let it bring you down
    It's only castles burning,
    Find someone who's turning (selling drugs)
    and you will come around."

    Who needs reality when you can have drugs and positive thinking?!? :woot:
     
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  15. slysaint

    slysaint Senior Member

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    I bought a second hand copy of his book (the Perrin Technique) earlier this year after reading one of the threads here about it. Quite early on when explaining his theories he says he thinks Chronic fatigue syndrome is the right name.
    That did get my back up(no pun intended) but I read the rest. Like most theories, some of it sounded reasonable but his methods of diagnosing CFS (whilst it might apply to some people with wonky spines) did seem to be another case of forcing 'signs' to fit the theory. The only element that might be relevant is the lymphatic system, although not necessarily in the way he describes in his theories. I did email him to ask about how his theories stack up against the latest research findings but did not get a reply.

    I pulled a muscle in my neck trying to do the back massage myself so that was a non-starter.
    But I do still do the face, neck, and boob massage in the bath...........although not with oil, with soap......better known as washing.
     
    Last edited: Apr 8, 2017
  16. Kina

    Kina

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    Who are the 'they' that have proven his theories are 'fact'.

    His theory is (from his website)
    So how do stressful emotions cause a build up of toxins in the fluid around the brain? Where is his research to support this or any research to support this?

    Where is the research to show normal drainage points in ME patients are congested?

    Where is the research to shows that toxins cause ME? And which toxins would they be? And where is the research that shows what symptoms the toxins are causing?

    I see his technique is trademarked and if you have the proper credentials you can get in on the franchise. So basically he is marketing detoxification based on no real research.

    Another huge problem I have with this is his description of 'congested drainage points' in ME patients.
    When lymph flow is impeded, it results in lymphedema which affects approximately 100 million people worldwide. Symptoms include swelling where the flow is impeded, pitting edema. ME patients don't generally show any signs and symptoms of impeded lymph flow. How is this possible? How is it that 100 million people with impeded lymph flow aren't suffering from brain toxicity.

    The presence of any chemicals in the body doesn't mean they are doing harm.

    There are a lot of products out there that describe the kidneys and liver as filter-like mechanisms where the catch and retain the 'toxins'. You need the product to clean out your kidneys and livers. The problem with this, it isn't how the liver and kidneys work.

    The liver performs a series of chemical reactions to convert 'toxic' substances into ones that can be eliminated by the bile or in the kidneys. 'Toxins' don't accumulate in the liver because it is basically self-cleaning. The liver functions just fine unless you have some kind of liver disease. The kidneys function to excrete waste products into the urine. Substances the body needs are reabsorbed, waste is not. It is a huge problem for the kidneys to malfunction.

    Perrin is selling detox too via massage. His statements show he is either profoundly ignorant of how the human body works or he is a clever salesman.

    Perrin is also profoundly ignorant of how science works if he did say his theories have been proven as 'fact'.

    Nothing about the Perrin is alluding 'detox' has been proven as 'fact'. In science, theory refers to a well-confirmed explanation of something that is made in a way consistent with scientific method. Hypotheses are testable and are descriptive accounts of how nature behaves under certain conditions.

    His so-called 'theory' of lymph flow and toxins is not well-confirmed and certainly hasn't been formed using any scientific method. I think if his hypothesis about lymph flow and toxin were to be tested using proper scientific methodology, it would all fall apart rapidly.
    Which part? I think a brain scan would reveal the mechanical details but not the rest of his speculative associations to toxins and ME.

    That inspires no confidence in me. Why a 'Harley St' neurologist? I have not heard of a neurologist who would support massage to rid the body of toxins. What toxicology tests would they be using -- this would have to be a private venture because I don't see the NHS supporting this. Just what are they going to be testing for? Most of these tests reveal the presence of drugs/chemicals in the blood and/or urine which would not indicate their presence in the lymph fluid. Wouldn't you have to test lymph fluid directly?

    Evidence. I have never seen this in any of the clinical criteria.
    We do have something called the blood brain barrier that protects the brain from many chemicals. When toxins build up in the brain because they get across the BBB, it's called toxic encephalopathy:

    https://en.wikipedia.org/wiki/Toxic_encephalopathy

    Lymphatic drainage is not the treatment for a buildup of toxic chemicals in the brain.

    New research suggests sleep might be a factor -- https://www.nih.gov/news-events/news-releases/brain-may-flush-out-toxins-during-sleep

    More about the 'world-renowned' Professor Mathias --
    http://forums.phoenixrising.me/index.php?threads/professor-mathias-m-e.8942/
     
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  17. Effi

    Effi Senior Member

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    I read that too, about the wonky spine and some other diagnostic markers he uses, but a lot of it didn't apply to me either. That made me wonder how/why he came up with this.
     
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  18. Valentijn

    Valentijn Senior Member

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    He has a treatment to sell and needed to create a market for it?
     
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  19. Effi

    Effi Senior Member

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    Yeah, but a wonky spine? That is so specific... not the most useful marker to create a big pool of potential clients...
     
  20. barbc56

    barbc56 Senior Member

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